January 22, 2002

Great news yesterday!  I have been corresponding with Anne Marie, moderator of the Pituitary Hormone Deficiency Group at Yahoo Groups. Anne Marie suggested I contact her endocrinologist who practices in another province in our country.  On Friday I finally had the energy to put my thoughts together in a coherent manner and emailed him.  What a wonderful surprise when the phone rang at noon yesterday and this lovely lady told me that this endocrinologist would like to see me.  The only stipulation is that I need to get a referral letter to him from my family doctor. This will be my top priority when I see Squirt tomorrow.

Today is my fourth full day on Lasix.  I have been taking two a day – one first thing in the morning and one at lunch time.   Of course I am making continuous trips to the bathroom but on the whole I am just as bloated as I was on Friday night when I first started the Lasix.  When I press down on my legs from my knees to my ankles, I leave deep indentations which take forever to go away.  My feet and ankles are also affected in this way.  My hands are so swollen that I cannot see my knuckles.  I have not lost any of the weight I gained back so suddenly after being released from emergency.

Squirt told me to stop taking the potassium pills that had been prescribed for me when I left emergency.  I decided that I would continue to take them until today because I was not going to take a chance on another potassium crisis over the weekend.  After all, the Lasix I am now taking twice a day is much stronger than the diuretic I was taking once a day before the crisis.  Tomorrow is my appointment with Squirt and I will have a blood test to determine my potassium level.

I do not feel good about my appointment tomorrow.  I seem to get a premonition when an appointment will be a complete waste of time. Hopefully I am just tired and miserable and that I will be pleasantly surprised by tomorrow.  I am not at all sure that my decision to ask Squirt for this letter of referral is such a good idea.  However, No Name, my other choice, is still on vacation.  We will see if Squirt is capable of writing a simple referral letter.  I have faxed Squirt a note which reads in part as follows, “I would very much like to go to __________ and see this endocrinologist.  However, I would like to be able to see Dr. ____________ without him having preconceived ideas about my health concerns and without him being prejudiced by what the other endocrinologists have determined.”  I will soon know whether Squirt is capable of following simple and explicit instructions.

 

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January 18, 2002

SquirtMy husband called Squirt’s office first thing yesterday morning and left a message for Squirt to return his call.  He also called Dingaling’s office and left a message for Dingaling to return his call.  I think that hell will freeze over before Dingaling stoops to return a mere layman’s phone call.  Now the reason that my husband called these two chaps was because I was feeling miserable and really did not have the strength to deal with them yesterday or today.

Poor abused Squirt!  Squirt finally called my husband late this afternoon.  He then called me to tattle on my husband.  Squirt told me that my husband had been rather upset and a little bit rude.  I told Squirt that he was lucky that he had not talked to me first.  I would have been a whole lot more upset and a whole lot more rude.  I asked Squirt how Dingaling dared tell me I had right heart failure and then not bother to return my husband’s phone call.  I told Squirt that it was cruel to let me sit here for four days wondering what would happen next.

Squirt’s big excuse was that Dingaling had not called him after my Monday appointment.  See, I was right about how important my life and diagnosis are to Dingaling.  Out of sight out of mind is how  Dingaling operates.  Squirt claimed he had finally called Dingaling when he noticed my husband’s telephone message.  Whoopee ding!

The only news that Squirt had for me was the result of my PV Lung Scan.  It was clear and showed no lung disease or tumors.  Thank God for that!  All the other test results were not available as of today.

Squirt went on and on about how much he cared.  He explained how he was doing everything in his power to help me.  I let him babble on for a while and then I interrupted and told him that “trying” was no longer good enough.  After almost four years of begging for help I wanted results and I wanted them now!   Squirt told me that I always had the option of finding a new family doctor.  My answer to that was, “Do you know of a doctor who will actually listen to his/her patients?”  Instead of answering that question, Squirt went on to tell me that he felt that I was better off staying on as his patient.  I am still wondering what he meant by that.  I wonder in whose best interest it really is if I stay on as his patient.  After all it might be down right embarrassing for Squirt if a new doctor diagnosed me in a few weeks.  Mind you once these noble physicians get their medical degree, I think the capacity to experience embarrassment goes right out the window.  Doctors really have no reason to be embarrassed.  They either stumble on a diagnosis or they put a tag on your toe.

Squirt and I then had a discussion about my fluid retention problem.  Since obeying doctors’ orders and stopping the potassium sparing diuretic I was on, I have bloated to the point where my skin feels like it can stretch no more.  In fact, I have experienced shortness of breath for the very first time in my life.  Squirt finally agreed to put me on Lasix.  When I asked if this was a potassium sparing diuretic he said no.  I asked him about potential potassium problems.  He assured me that the potassium crisis I had last week was just a “one time occurrence.”  In fact he told me to stop taking the potassium supplement I had been prescribed in emergency.

Squirt made an appointment for me to come and see him next week Wednesday, January 23.  He will do a blood test to check my potassium levels at that time.

In the mean time no one has reassured me that the right sided heart failure problem can be resolved.  No one has reassured me that the potassium problem will not occur again.  In fact, no one has reassured me that they will try to get to the bottom of this problem.

 

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January 17, 2002

Today I am angry – very angry. I had the PV Lung Scan on Tuesday morning. I have been sitting here for three days wondering what the heck is going on! No one has bothered to call. I guess right sided heart failure is just a silly little inconvenience.

Quite frankly I am not sure I believe this diagnosis. Dingaling was so adamant on Monday about NOT checking for Cushing’s or any other problem associated with the adrenal or pituitary glands. His big excuse was that I had been thoroughly examined by several endocrinologists.

Let me give you a quick update on the diagnostic skills of these endocrinologists. The first endo, Blonde Bimbo got her knickers in a twist when I didn’t recover according to her expectations! The last time I saw her was in June, 2000 and she threw a hissy fit because my husband was with me. She went on to tell me that I was fat, depressed and menopause. She threw fibromylagia into the mix as well. I have never claimed to be a mental giant but I am intelligent enough to figure out what a diagnosis of fat, depression, menopause and fibromylgia means.

Then there was the Leprechaun. He of course agreed that I was fat, depressed and menopausal. He could not possibly disagree with the Bimbo’s diagnosis. He threw my carefully constructed symptom list into a corner. When Leprechaun looked at my pictorial history he started to laugh and said “My you are fat!” I figured the idiot could have told me something I didn’t already know! He spent all of 10 minutes with me. He never even checked my blood pressure. I kept my winter coat on throughout the consultation. In the end his solution was go give me a prescription for diet pills which I have never filled. I have come to the conclusion that Leprechaun’s real purpose in life is to see “women like me” and make sure we have received our full quota of insults for the year! After all he wouldn’t want us to get too cocky.

Then there was Supercilious. This arrogant excuse for an endocrinologist had two residents interview me. After receiving my medical records from the hospital where Supercilious has his clinic, I was horrified to read that the residents never bothered to get my answers right. Quite frankly I have no idea what dimension they were in when they wrote down my answers to their questions. Maybe they “took a little trip but never left the farm!” Supercilious did a Water Deprivation Test. The test turned out to be a mess because all but one of the blood samples were
hemolyzed. My Vasopressin levels came back below normal. But this did not deter Supercilious from declaring that there was nothing wrong with me but a little depression and a lot of fat. I find it amusing that these so called medical professionals are so self absorbed that they cannot tell the difference between depression and pure unadulterated anger!

So here I sit and wait. These geniuses I am dealing with do not have the common courtesy to let me know what is going on with my body. I am more and more convinced that this right heart failure business is a ploy to get me to run in the opposite direction as fast as I can go. No one holds these keepers of the key to medical care accountable for what they do and do not do. Makes me wonder what they think about 53 year old women. I guess these medical wonder boys think once you hit 53 life is basically over. If they did not believe this they would take me and my problems much more seriously.

Oh yes, I have gained 22 lbs in the last 5 days! But that is what happens when a person has edema and is told to stop taking a diuretic! When I was in emergency with the potassium crisis, the all knowing Squirt told me to stop taking the potassium sparing diuretic I was on. He, of course, never heard the part about it being a “potassium sparing” diuretic. I have been off the diuretics since last week Thursday. Even medically uneducated me knows that if you have right sided heart failure it is not a good thing to be retaining this much fluid!

I wonder if and when some of these healers will be held accountable for their actions? They are a rather fortunate lot – they get to bury their mistakes without consequences.

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January 15, 2002

After taking many deep breaths last night, I think I have recovered from the shock of yesterday. I will continue with my January 14th saga. Of course, I am presuming you are all waiting with anticipation for the next installment of my pathetic tale. I am being factious – LOL (laughing out loud).

As I mentioned yesterday, my appointment was scheduled for 2:30 PM on January 14. I arrived early and thus had the privilege of waiting just that much longer in a consultation room. I reiterate – reading material in a medical professional’s office leaves much to be desired. But then I guess they presume because we have succumbed to our illness we must be in the low percentile of the intelligence scale. Winnie the Pooh books should do us just fine!

My husband accompanied me on this particular visit. I had a feeling that I would need his input and support. I was so thankful he was there with me.

The first person to come through the consultation door was a resident. Poor thing, I felt kinda sorry for her.   She walked in and the first thing she said, “Dingaling has requested that I interview you and take notes which he will look at later. She went on to say, “I hope this is okay with you.” Still seething at the fairy tales the last two residents wrote about me, I answered with, “Yes I do mind. However, if you can promise to tell the whole truth and nothing but the truth you may proceed. I will not have my symptoms distorted and falsified on the notes you take.” Quite Bright was a smart woman. She backed off and let me rant for a while.

Quite Bright then proceeded to do a very thorough investigation. She went through my symptom list and questioned me about each one. She repeatedly verified information before she wrote it down. She also did a physical exam and seemed to be particularly interested in what I thought were the skin tags on my neck and the spots on my back. She had me lie down on the examining table and spent an inordinate amount of time looking at and touching what I thought was the skin tags the right side of my neck. I was beginning to wonder if she had a thing about necks.

Then Dingaling entered the room. I never know whether to bow or drop to my knees when these highly esteemed persons present themselves to me. However, I always take the easy road out and just look them straight in the eye.

Quite Bright informed me that she and Dingaling would discuss my case in front of me and that I could interrupt whenever I wanted to. Dingaling asked Quite Bright what her diagnosis had been. She informed him that she felt that I needed to be investigated for Cushing’s. Dingaling actually became indignant when Quite Bright mentioned Cushing’s. He informed Quite Bright in no uncertain terms that he was not going to investigate Cushing’s. I asked him why? He told us that Squirt had called him and told him that I had been thoroughly investigated by three endocrinologists and that he Dingaling was to find a different problem. I told Dingaling that these thorough investigations where a figment of Squirt’s imagination. I told Dingaling it was hard to be thoroughly examined with a winter parka and boots on. Dingaling ignored my comments – so much for the promised dialogue between Dingaling, Quite Bright and me. To Quite Bright’s credit, she tried once more to convince Dingaling that I needed a Cushing’s workup. She proceeded to list the reasons why. Dingaling did a cursory inspection of the symptoms Quite Bright pointed out to him. Dingaling then made it very clear that the symptoms I had were not severe enough to warrant a Cushing’s investigation.

Dingaling asked Quite Bright if she had any other diagnosis she wanted to tell him about. She went on to tell him that she felt I had right heart failure. He told her that he agreed with her. They then asked me to lie down again and Dingaling became very intrigued with my neck. When he asked for a measuring device I finally spoke up and said, “Surely you are not measuring my skin tags!” That is when I was informed that they were measuring my carotid artery. And that is when I got scared!

I really do not know what the exact outcome of this appointment has been. Dingaling and Quite Bright began to discuss the various tests I should have. They did this in a hushed tone even though I told them I could not hear what they were saying. I guess it was their intention for us not to hear them.

After this quiet discussion they told me to stop at the receptionist’s desk to pick up all the lab tests they had ordered. I asked Dingaling what my final diagnosis was. He answered with, “Right sided heart failure.” I asked what he planned to do about it and he told me that there was nothing to discuss until the tests results came in. They then left for parts unknown.

The nurse at the receptionist desk was wonderful. It was just past 5:30 PM and she was perceptive enough to realize that we were from out of town. The drive to this hospital is about 50 miles. She arranged for me to have all the blood work done before I left the hospital. She had an EKG technician come back to do the EKG. My husband and I went to a wonderful Italian restaurant for dinner and came back to the hospital for my chest x-ray at 8:00 PM.

The EKG technician and my husband discussed my EKG results and I do know that it showed an AV blockage. However this could mean anything or nothing.

I am totally exhausted. I am worried about the symptoms they did not bother to address. I do think that the peripheral vision loss, the weight loss and the potassium crisis are symptoms that should be investigated. However, for the time being these symptoms and many others are being ignored.  I wonder about the directive Squirt gave to Dingaling.  He told Dingaling to ignore Cushing’s and find another problem.  Makes me wonder if this right sided heart failure is the imaginary problem they found. Do they think that I am a hypochondriac and that by telling me I have right sided heart failure I will be so intimidated that I will run for the hills?  Well the silly buggers do not know me very well!

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January 14, 2002

 

Today is a day I will not soon forget. Today I went to the appointment with the doctor of internal medicine. I spent from 2:30 – 5:30 with the doctor and resident. Since I am absolutely and completely exhausted, I will give you a quick recap of my day and fill in the blanks after I have absorbed the news.

From now on I will refer to the doctor of internal medicine as Dingaling. I will refer to the resident as Quite Bright.

According to Dingaling and Quite Bright I have right side heart failure. Why, they cannot tell me. How, they cannot tell me. I had an EKG, xray and blood work right after the appointment. Apparently the EKG showed an AV blockage. I have to go back first thing in the morning for a PV Scan. They are checking my lungs for blood clots. All I have been told so far is that my weight gain, edema, sleep problems, restless and cramping legs, fatique, high blood pressure etc. can all be symptoms of right side heart failure.

They have not explained the deteroiation of my perpherial vision, the weight loss of 34 lbs and the potassium loss. In fact there are a whole list of symptoms they have not explained. Quite Bright told Dingaling that she felt I needed to be investigated for Cushings. She felt I had right side heart failure and possibly Cushings. Dingaling told her that I could not have Cushings since I had been seen by endocrinologists.

I am in a state of shock.
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January 11, 2002

I have to apologize for not keeping these diaries current. This past week has been quite a nightmare.

Late Saturday night, January 5th, I lost some of my hearing. Since this had happened before, I figured I was in for another bout with Meniere’s. On Sunday morning, January 5th, I woke up very nauseous and dizzy.   I spent most of the day lying on the couch and took my Serc as directed. By Monday I realized that the Serc was not working and began to think that maybe this had nothing to do with Meniere’s.  I also weighed myself on Monday and found that I had lost 34 lbs in 13 days. By Tuesday I knew something serious was going on. My temperature was now fluctuating between normal and 102 degrees. Not only was I very dizzy and nauseous but my head felt very strange.  I had what felt like a sore, stiff neck and the back of my head ached especially if I put pressure on it. The ache was different than a headache.

Tuesday afternoon I called Squirt and described my symptoms to him.  I told him that it no longer felt like Meniere’s.  Squirt told me that I probably had the flu.  He also reminded me of the internist appointment I had on January 14th.  On Wednesday I had a very strong feeling that if I did not go to emergency I would be in very big trouble.  At that  point I had absolutely no clue what could be wrong.  My husband took me to emergency  at 7:00 PM on Wednesday evening.  After a two hour wait in the waiting room and a one hour wait in the consultation room I begged my husband to take me back home.  However, we persevered and finally at 11:00 PM I was seen by the emergency doctor. I described my symptoms to him including the weight loss of 34 lbs in 13 days. He asked me if I had any other medical problems. I told him they were too complicated to get into right then. I did tell him that I had high creatinine levels, high sodium levels, high BUN and low potassium levels. The emergency doctor ordered some urgent blood work and to my surprise they discovered that I had dangerously low potassium levels.

They kept me in for 24 hours on a potassium drip. Thursday morning at 8:00 AM Squirt arrived in emergency. He walked into the consultation room where I had spent the night and said, “You really are sick!”  I answered with, “Yes and I have been trying to tell you this for the past three years!”  Squirt told me the emergency doctor had called him at 12:30 AM to tell him that I was in crisis in emergency. He muttered something under his breath about adrenals and Conn’s disease.  Squirt then left leaving instructions that I was to stay in emergency on a potassium drip until my levels were back to normal.

I was finally discharged at 7:00 PM on January 10th. I was given a prescription for potassium and told not to miss the internist appointment on Monday, January 14th.

I must say I feel much better but am very exhausted. I was told that I could expect to feel this way for a few days. They did not find out why I have lost 34 lbs in 13 days nor did they find out why I had this sudden potassium crisis. Just too weird.

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December 26, 2001

Our daughter, son in law and grandson came by this morning at 9:00 AM to take us to the airport. Security at the airport was not as troublesome as I had expected. We only had a problem with a clock we were taking as a Christmas gift. We needed a battery in a hurry to prove it worked. Our flight left at 12:00 noon. I was able to sleep for most of the three hour flight. We arrived in Vancouver at 1:09 PM, went through US customs and at 3:30 PM continued on to Seattle. It was clear enough that we were able to see many of the little islands between Vancouver and Seattle. Saw Victoria in the distance. The Seattle airport was interesting – took us a minute to realize that we needed to take a train from the arrival gate to the luggage area.

Our son and daughter in law were waiting for us and it was so good to see them again. After having lived in a small city for the past 6 years, I have to admit that the Interstate gave me goosebumps! It did take me a few minutes to resume normal breathing after I realized that the speedometer was showing the speed of the car in miles not kilometers.

So far today I feel no worse than I normally do. My legs are cramping and I have some flank pain but I have had this level of pain at home.

Oh yes, a week ago my darling grandson said, Nana, you will be very sad if you go to Seattle for so many days. I asked him why he thought I would be sad. He said, Nana, you will be sad because you will miss me so much! Out of the mouth of babes!

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December 17, 2001

Such a busy time – I really have to make an effort not to get stressed out and anxious. My body just does not do well with stress these days.

Managed to get out of the house by 11:00 AM this morning to run errands and do some more Christmas shopping. I am almost done – sure makes me wonder though why after 53 years I have not learned to start my shopping in September. Certainly would make life easier in December!

My first stop was the Travel Agency to pick up our tickets for our flight to Seattle on December 26th. This will be a much welcomed 10 day break. We will be returning on January 4th.

I had a haircut in the afternoon and I must say that my comfort level rose dramatically after that. Since my hairdresser is located in the same Mall as the Hustler, I decided to stop in and see if my medical records were ready to be picked up. HAHAHAHAHAH!

The girl at the front desk informed me that the Hustler never allowed people to get copies of their medical records. I informed her that I had been in on Friday afternoon to discuss this issue with the Hustler and that the Hustler had consented to release photocopies of my medical records. The dingbat at the front desk just repeated the big RULE about not releasing medical records. I asked her what kind of game she thought she was playing. I also asked her whether my Friday visit to the Hustler had been a complete waste of time. I informed her that I was quite prepared to take this issue up with the College of Physicians and Surgeons. In the meantime the Hustler joined us at the front desk. I guess he decided to check out the annoyed “customer”. He asked me for the upteenth time whether I was absolutely sure that I wanted copies of my medical records. I just gave him “the look” and he quickly informed the girl at the front desk to go ahead and make the photocopies. The Hustler told me to come back later in the week and promised again that my records would be ready for me.

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December 14, 2001

Today was the day I met with the Hustler to discuss the release of my medical records. I waited patiently in the consultation room for his grand entrance. Trust me, it was a grand entrance. He sat down and asked me what he could do for me. I told him that I was there to collect copies of my medical records. He then took pen and paper in hand and began to draw me a diagram while explaining how it was not his policy to give patients copies of their medical records. His diagram consisted of three circles which he named patient, document release form, and new doctor.  I told him that even though his diagram was very clear, I was determined to get my records.

The Hustler asked me what in the world I wanted to do with my medical records. I told him that quite frankly it was none of his business but I would be happy to tell him. I told him that I was planning to find my own new health care provider in the New Year and that I was seriously considering going to the United States. He then asked if I was planning to move to the United States and I told him that I had no such plans. I told him that my reason for a trip to the United States would be to find proper medical care.

The Hustler then asked me if I knew that I was sick and had troublesome test results. Excuse me, but this was not exactly a news flash! I looked at him in disbelief. After all these troublesome lab results had been in my file since June. He then described each undesirable lab result and of course, continued to draw diagrams. He presumed I was to stupid to understand what he was telling me without visual aids.

He continued in this vein for quite a while. I listened patiently. Finally he asked me if I had not been made aware of these test results. I told the Hustler that the last time I had visited his clinic had been to see one of the doctors working for him. In fact, I had received a phone call from the secretary at the clinic telling me that I had to come and see a doctor so that he could discuss my lab results with me. I went on to tell the Hustler that after rattling off my lab results that day, No Name had told me that he had no idea what to do. I informed the Hustler that I had told No Name that day to phone me if and when he had an solution. I told the Hustler that I was still waiting for that phone call!

The Hustler went on in great detail about tests that I should have and medication I should and should not take. Finally he asked me how I would like to proceed. I informed him that at this time all I was interested in where the copies of my medical records. I told him that I was taking a break from doctors and would decide in the New Year what my next move would be. I told the Hustle I could either go to the United States where I would receive prompt and proper medical care or I could stay right here and raise holy hell.

That pretty well terminated the appointment. The Hustler assured me that the copies of my medical records would be ready to be picked up on Monday or Tuesday of the next week.

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December 10, 2001

Last week I had a phone call from the secretary at No Name’s office. They wanted my husband to come in and discuss his recent lab work. Since I was running out of Amiloride and Serc, I told the secretary that she might as well book appointments for both of us. When I do not feel well enough to drive into the city for my prescription refills, I often make an appointment with No Name. All three medical clinics in my city do not refill prescriptions over the phone. You can be on your deathbed with not a pill left in the house and they will very kindly book you an appointment two weeks down the road.  I asked the secretary at No Name’s office why our esteemed physicians refused to pick up the phone, call the pharmacy and order a repeat prescription. The secretary informed me that since our provincial health care insurance had stopped paying the doctors for making these phone calls to the pharmacies for repeat prescriptions, the doctors could not longer afford to pick up the telephone. And you know me; I would hate to drive some poor, underprivileged, underpaid physician into the poor house!

The appointments were scheduled for today at 1:30 PM and 1:45 PM. The secretary did tell me when she called that No Name had moved to the new city  clinic and that he was on a six week vacation.  She went on to tell me that my husband and I would be seeing No Name’s substitute.

That afternoon I arrived at the new clinic with its waterfalls, new computers and abundance of secretaries waiting like vultures at the front desk.  I approached the reception counter and told them who I was.  One of the secretaries, whom I shall call Miss Priss, looked at me and said “Oh Widebertha, we don’t know if you will be able to get your prescriptions filled today. You see we do not have any of your medical files.” With this she dramatically opened the empty file folder and stuck it under my nose. I calmly replied, “Since when has that become my problem.”   Miss Priss went on to tell me that I could pay $40.00 to transfer my records to No Name.  My reply was, “When Pigs Fly!”

After a rather lengthy wait I was ushered into the consultation room. Finally I had the privilege of meeting Bushwhacker. Trust me there is a very good reason for calling this man Bushwhacker. Never in my 53 years have I ever had a doctor come into a consultation room wearing a holster that held a huge Swiss Army knife. I am still not sure what kind of game he expected to find waiting for him in that consultation room! Took me a few minutes to get over the shock!

Bushwhacker, with what sounded like an Australian accent,  asked me a few questions about my health. Quite frankly I did not get the impression that I was dealing with the brightest bulb in the tulip patch. He finally wrote out the prescriptions I needed and I was on my way!

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